Why learning I’m autistic has been a blessing

Written By The Good Housekeeping Web team | 24 November 2016

Emily, 29, on the unique struggles autistic women face.

Autism doesn't just affect boys. But autistic women are far more likely to be misdiagnosed than their male counterparts. For many women, it's not until much later in life that they are told they have high-functioning autism or Asperger's Syndrome.

Carol Povey, director of the National Autistic Society's (NAS) Centre of Autism points out that every one of the autism spectrum is different. But, as a rule, girls are often better at developing ways to mask what we traditionally think of as the signs of autism, which can make it harder to diagnose.

'This masking can lead to a great deal of stress, and many women and girls go on to develop secondary problems such as anxiety, eating disorders or depression.'

What it's really like

Emily Swiatek, 29, knows what it's like to be misdiagnosed – she was told she had many different conditions before she got her diagnosis of Asperger syndrome last year. Here she shares her experience of being a woman with autism and the difference the correct diagnosis has made to her quality of life.

'I've always felt quite outside other women and girls; I didn't really fit in at school. But I've always been very clever. And I think because of that, it was quite easy to look over me. To write my differences off as just a side effect of being a bookworm. My autism was hidden and I didn't really have the language to describe what was going on because: how do you know your experience is different to other people's?'

When it suddenly clicked

'And before my autism was confirmed, I'd been misdiagnosed with quite a few conditions. Up until about five years ago, I'd been just about managing to mask my symptoms but then I started to have non-epileptic seizures. These happen because of sensory overload which is really common in autism. But the link wasn't considered. Instead, I was told I had other things, from borderline personality disorder to bipolar, as my mental health appeared to get worse and worse.

'It wasn't until I started working at the National Autistic Society last year and met another autistic woman for the first time that it occurred to me that I might be autistic too. It was like: 'oh my goodness. You are me'. And so because for autistic people that hypothetical thought is so hard, it wasn't until I saw it in someone else that it suddenly clicked that it was the same for me. And then I got that diagnosis and it was a life-changer.'

'It made me look back to university, to secondary school and primary school and see all these situations that I just hadn't quite understood socially. In my first year at university, for example, I was playing a card game with some friends. I thought everything was fine but then two of the girls became very upset and left. I thought I'd just been joking and playing along with everybody else but clearly I'd done something that crossed a line I didn't know.

'When I tell people I'm autistic, I can see them looking for it. There's always this look of confusion. But even though I'm really chatty and sociable and break a lot of stereotypes for people, there will be times when my condition prevents me doing things. The other day I had to work from home because I spent my morning non-verbal. That doesn't mean I was choosing not to speak but I physically couldn't speak because I got to a point of social exhaustion where I just needed to completely reset. There will also be times where I'll have meltdowns and hit myself. That contrast is quite challenging for people to see and understand.

'I was lucky because I was able to see a doctor who actually specialised in women and autism. Because, like a lot of women, I mimic very well. I'm very chatty and eloquent and I pass quite easily for not being autistic. But there absolutely needs to be better training for doctors, especially looking for it in women. Looking for the more subtle signs. And I think there needs to be more general awareness-raising. I want to see more female role models with the condition. Where are the successful women who are succeeding in their careers and have positive relationships in their life but also have autism?'

Seeking support

'My advice to women who think they might be on the autistic spectrum would be to do as much research as possible. Then go and talk to your GP with notes of how your condition impacts your life or makes it challenging to communicate and see if you can get a referral to specialist. But you don't have to wait until you've got a diagnosis to find strategies that will help you manage your life. Definitely go the National Autistic Society website because there's loads of good info there.'

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